http://www.cbtrf.org/forum/ en Wed, 08 Sep 2010 12:38:03 GMT vBulletin 60 http://www.cbtrf.org/forum/images/misc/rss.jpg http://www.cbtrf.org/forum/ http://www.cbtrf.org/forum/showthread.php?t=405&goto=newpost Wed, 01 Sep 2010 19:56:06 GMT Lucy, our now 15 month old, was diagnosed at 1 with brain tumor AT/RT. We opted to do high-dose chemo with stem cell rescue to prolong radiation. We... Lucy, our now 15 month old, was diagnosed at 1 with brain tumor AT/RT. We opted to do high-dose chemo with stem cell rescue to prolong radiation. We have finished third round of chemo. Next three rounds are the tough ones followed by the stem cell rescue....IF our MRI shows the tumor regrowth (which started BEFORE we even started our chemo) is responding.

Lucy is puking all the time, has diarrhea (posibly due to NJ tube, low electrolytes and her left eye is starting to droop (possible vincristine side effect). It feels like we just can't catch a break. But I am wondering if it is because we don't have a realistic view of what the side effects are for the various treatments.

I thought it would be helpful to hear what else everyone has gone through during their treatments to help us set some realistic expectations and maybe not freak out every time something new pops up.

I suspect this could be beneficial for others newly in the process as well.

Thanks everyone, Bev and Brian Weber (caringbridge.org lucyweber) ]]> Rhabdoid Cancer Discussion weibart http://www.cbtrf.org/forum/showthread.php?t=405 http://www.cbtrf.org/forum/showthread.php?t=403&goto=newpost Wed, 25 Aug 2010 02:22:41 GMT http://www.caringbridge.org/visit/ka...al?jid=5997499

CHOP has said no

Reposted from Kaiden Abul-Ela's carepages:

Again, I ask for help. If anyone can open a door for us into one of the following:
Boston Children's
Univ of Florida, Proton Therapy Institute (St. Jude collaboration)
Roberts Proton Therapy Center, Univ of Penn
MD Anderson Center, Houston, TX ]]> General Discussion Forum Amanda http://www.cbtrf.org/forum/showthread.php?t=403 http://www.cbtrf.org/forum/showthread.php?t=402&goto=newpost Mon, 23 Aug 2010 04:15:41 GMT Madison was diagnosed 15 days ago with ATRT with primary tumor on her spinal cord. Pediatric NS took out tumor (total resection). Scary part is... Madison was diagnosed 15 days ago with ATRT with primary tumor on her spinal cord. Pediatric NS took out tumor (total resection). Scary part is they say she is so rare because they don't start there. Little to no info is there on older kids. Please ask around and let me know if u know someone that can help! ]]> Rhabdoid Cancer Discussion arachel http://www.cbtrf.org/forum/showthread.php?t=402 http://www.cbtrf.org/forum/showthread.php?t=400&goto=newpost Fri, 20 Aug 2010 05:03:33 GMT http://stemness.com/new-twist-on-drug-screening-to-treat-common-childhood-cancer-1438.html From the article:The idea of repurposing existing... http://stemness.com/new-twist-on-dru...ncer-1438.html
From the article:The idea of repurposing existing medications is not new, but testing them on the cells isolated directly from children and that are thought to be responsible for the spread and regrowth of their tumours is novel
This is a new way of developing drugs for kids, as we are taking the patients’ own cancer stem cells and testing them in the lab.”
If the clinical trial shows positive results, this could be the beginning of a personalized medicine approach, Kaplan says. “Our dream is that children will come to SickKids, we’ll isolate their cancer stem cells, screen them with libraries of drugs and find out whether Patient A will respond to Therapy B. ]]> Articles, News, and Events Amanda http://www.cbtrf.org/forum/showthread.php?t=400 http://www.cbtrf.org/forum/showthread.php?t=399&goto=newpost Fri, 20 Aug 2010 04:30:05 GMT http://www.ajnr.org/cgi/content/abstract/25/3/476 From the article:Summary: Four patients with brain tumors were diagnosed with atypical... http://www.ajnr.org/cgi/content/abstract/25/3/476
From the article:Summary: Four patients with brain tumors were diagnosed with atypical teratoid/rhabdoid tumors and underwent CT and MR imaging. For all tumors, aggressive features were shown by imaging studies and included hydrocephalus, apparent invasion of the adjacent brain and dura, and marked mass effect. The striking heterogeneity of the atyp- ical teratoid/rhabdoid tumor shown by imaging studies reflects the histopathologic complexity of these tumors, and awareness of atypical teratoid/rhabdoid tumor is important in making the correct diagnosis of this uncommon but probably underdiagnosed entity.

This link seems to give you the full study ]]> Articles, News, and Events Amanda http://www.cbtrf.org/forum/showthread.php?t=399 http://www.cbtrf.org/forum/showthread.php?t=396&goto=newpost Mon, 16 Aug 2010 18:08:36 GMT Hi everyone I just registered here.. I am the mommy of Morgan Fogakoldyke www.caringbridge.org/visit/miraclemorgan... Hi everyone I just registered here.. I am the mommy of Morgan Fogakoldyke
www.caringbridge.org/visit/miraclemorgan

My best friend SASZ told me I should join so that maybe Morgans story could help someone else.

She has 2 old sites:
www.caringbridge.org/in/morganfogakoldyke www.caringbridge.org/in/morgan_fogakoldyke

feel free to add her on fb
www.facebook.com/princessofmiracles

she also has 2 groups on there...

www.morgansmission.blogspot.com/

She was diagnosed in 2003 with PNET and then RE DIAGNOSED with AT/RT of the brain and spine.

We just celebrated 5 years cancer free.. REMISSION.....

AUGUST 5, 2010 REMISSION SIGNED AND DATED BY THE ST JUDE DOCTOR!! ]]> General Discussion Forum morgansmom http://www.cbtrf.org/forum/showthread.php?t=396 http://www.cbtrf.org/forum/showthread.php?t=394&goto=newpost Sat, 14 Aug 2010 16:37:36 GMT My son is fast approaching the next phase of our treatment, radiation therapy. This is a step that we didnt have just 6 months ago. I am asking... My son is fast approaching the next phase of our treatment, radiation therapy. This is a step that we didnt have just 6 months ago. I am asking everyone to input information in this thread about the radiation options out there. I know of proton beam therapy and another intense beam therapy which is more traditional. What I don't yet is which is more affective, which carries greater risk of brain damage and to what degree of damage can be done by either. (i.e. difficulties with math and science vs. mental retardation) Any information or especialy first hand experiences would be helpful. Best wishes to us all!! ]]> Rhabdoid Cancer Discussion nabulela http://www.cbtrf.org/forum/showthread.php?t=394